Cheerful givers and kind hearts for my cheerful friend who need our help

This is Trisha. Trisha is one of my NF Friends who lives in Bicol. Trisha is a fighter and what I love most about Trisha is her very positive and cheerful personality is still intact despite all of the odds in her life.

This was taken when Trisha visited me at home last year

Trisha has Neurofibromatosis type 1 (NF1) and was diagnosed with sarcoma (malignant tumor) on her right forearm and her right arm, including her hand, got amputated recently. But the cancer cells already spread and reached her lungs. She was already done with 6 cycles of chemotherapy but the cancer keeps spreading and the tumor on her chest got even bigger and she needs to undergo another series of chemotherapy.

Instead of being sad for losing her arm, she cheerfully says, "It's cute!" 

We all know that the cost of any kind of medical treatment is so expensive and it’s not a light matter. Cancer treatment at that. It’s very costly and she and her family are already running out of funds. It’s continuously depleting, and then the money’s gone. It went to chemotherapy sessions, hospitalizations, lots of medicines, oxygen tank and other medical needs.

Trisha was a bit hesitant and shy to ask for help at first, but because she really don’t know anymore where to get money for her much need treatments, she bravely asked one of our NF Friends for help. “Hmmm… Can I ask for your help?” she continues “Borrow sana ako ng any amount pandagdag sa pambili ng meds.” And then these words pinched our hearts:  “Nahihiya ako gurl, but wala na kong matakbuhan.”

People need each other, right? I need you and your kind hearts to help my friend with this battle because she really needs us.

You may send your donations via bank deposit to her BPI account or send it through Cebuana-Lhuillier Pera Padala with her mom as the receiver or you can also deposit it to her mom's BDO account.

Here are the details:

BPI Express
Account name: Trisha Christine Amoroso
Savings Account number: 3929228323

Money transfer (Cebuana-Lhuillier)
Name: Hermosa Esta
Mobile number: ‭(0908) 126 4783‬‬
Address: Block 18 Lot 30 Camella Heights Cararayan Naga City

BDO
Savings Account Number:003500030917
Account Name: Hermosa Esta

BDO
Savings Account Number:003500030917
Account Name: Hermosa Esta

So Fisher Mall is really really really PWD UNFRIENDLY

Posted: April 23, 2018

I decided not to make my un-love letter to Fisher Mall anymore because I DON'T LIKE HATE and I choose ACTION instead.

I was supposed to write ab open-letter to Fisher Mall but decided not to that coz I feel like they will just ignore it just like how they brush off and didn't accept it when my mom tried filing a complaint to the mall's management the nexy day. National Council on Disability Affairs (NCDA) it is!

___________________

My mom tried filing a complaint to Fisher Mall management the next day. To no avail...WALA!

___________________

"Sunday we went back to Fisher Mall for the second day event. My mom went to the ladies’ CR to look for the janitress who helped us and sign as witness to the photos we took inside the cubicle. But she referred my mom to a person from an admin office representative.

According to Ms. Jendrean Lo, a Tenant Relations Officer, that wide door cubicle is intended for PWD, but my mom reitererated, how can you say it's for PWD? Not a single railing inside? Then Ms. Lo said "Mam sa ibang floors po may PWD CR."

___________________

All floors must have PWD CR, and to think that 4th floor is where their events halls are.

Kinda wide CR cubicle. We were really so surprised when we entered the cubicle.

___________________

So we filed a complaint directly to National Council on Disability Affairs (NCDA) and here's the draft of my letter:

••••••••••••••••••••••••••••••

Dear National Council on Disability Affairs (NCDA),

Greetings!

Last April 21, 2018, I have learned that Fisher Mall in Quezon City is PWD unfriendly because it hurt my feelings and hurt my mom’s lower back / spine. I am a PWD, my mom is a PWD – both of us have orthopedic disability.

We went to Fisher Mall to watch the National Open & Age Group Raw Powerlifting completion that was held on the event hall on the mall’s 4th floor. While watching the event, I told my mom that I need to pee and asked her to bring me to the toilet. Luckily, my dad was there to push my wheelchair because the toilet is a bit far from the event hall and since my mom uses a cane to walk, it’ll be hard for her to push my wheelchair alone. So we reached the toilet area. There is no PWD toilet. Good thing there’s a designated cubicle for PWD. Good thing? Or so I thought.


Since it is a women’s toilet, my dad can’t go inside so it was only me and my mom and that’s alright because she’s been assisting me in a PWD toilet for years and it’s not that hard F since there are bars that we can hold on to that helps us in keeping our balance.

But were really surprised when we went inside the cubicle.

With a flat wall and nothing to hold on to except my frail mother. We were looking around and tried to figure out how I can transfer from the wheelchair to the toilet bowl. We really can’t think of any easy way, we still can’t figure it out and I want to pee already. Bahala na!

While I was transferring to the toilet bowl, the lower part of my left leg kind of hit my wheelchair. I have a big tumor inside it and although it doesn’t really hurt, that leg reacts and jerks every time that happens. It happened and fortunately it happened when I was about to sit on the bowl.

And so I have to transfer from the toilet bowl to the wheelchair. My mom lifted me up again. My left leg felt so weak and I can feel my mom’s brittle bones and I was afraid t to tighten my hold on her brittle bones. I tried holding on to the flat wall but my hand just slipped. We were about to fall and then my mom pushed me on the wheelchair so that I won’t land on the floor. I was slouched on the wheelchair, my butt on the air, only my hips up to my back were touching the wheelchair, I haven’t wore my underwear and shorts yet and the worst part is, my mother’s hips, back and spine were aching. Thankfully, the janitress was on standby outside the cubicle door when my mom opened it to ask for help because I was still slouched and hanging on the wheelchair without underwear and shorts.

Because of their lack of sensitivity and concern for the PWDs, my mom’s weak and brittle bones that are often in pain became weaker and she need to undergo rehabilitation therapy. She has lupus.

Also, the so-called PWD cubicle is not big enough. The wheelchair can’t navigate properly.

If this happened to us, how about the other PWDs who will be using that so-called PWD toilet cubicle? The management kept saying that there are the PWD toilets on the other floor levels? And why not on the 4th floor then? I don’t think it’s not that hard to attach bars on the toilet wall that the PWDs can hold on to.

I am really looking forward for you to take action and investigate on this. It’s not only for my sake or my mom but for the PWDs who will also use that toilet in the future.

Sincerely,
Maria Kathrina Lopez Yarza

How can I transfer from my wheelchair to the toilet bowl? Wiwing wiwi na ko talagang talaga!

___________________

We are also filing a complaint against the Fisher Mall Management for my Mom's injury.

___________________

"I depend a lot on her since I am partially paralyzed, totally deaf and half blind. And her mobility after that incident is quite restricted now. What if I fell from my wheelchair during that incident?"

I repeat: Maliit na cubicle lang siguro para sa Fisher Mall (kaya ang dali nilang balewalain), pero MALAKING BAGAY ITO PARA SA MGA PWD.

___________________

So NCDA wrote a letter to Fisher Mall & Quezon City Mayor’s office and also forwarded my letter to them.

___________________

They placed a PWD sticker on the door of the cubicle. “Tabingi pa,” my mom said.

May 4, 2018 — Even though her hips were still in pain due to the accident, my mom went to Fisher Mall to file a file a formal complaint, again. They accepted it this time — the letter, but I but not their mistake My mom saw the so-called PWD cubicle of the said toilet and they already placed small bars on the wall and PWD on the door. I repeat: small bars. Maybe they were thinking, “pwede na yan” Still, there’s not enough railings and it’s not big enough to fit a wheelchair. When we went there the following day after the accident (May 22 – 2nd day of the Powerlifting competition), my sister even folded my wheelchair while I was seated on the toilet bowl so that she can move around and assist me while I was peeing.

They placed small grab bars inside the cr cubicle that is intended DAW for mothers and housewives and not for PWDs.

___________________

Letter from Dizon Dizon & Associates all the way from Baguio City. One for my mom & one for me.

May 21, 2018 — my mom and I both received a copy furnished letter addressed to NCDA from Fisher Mall’s lawyer. Lies, excuses, sarcasm, insults & lack of sensitiveness — those were the contents of the letter.

“On that particular occasion, the person on duty offered to accompany the mother and daughter to the PWD-restroom but the offer was sternly rebuffed.” >>>Talaga lang ha!?!?!?!

AOK

This is very insulting.

WHATEVER!

You are PWD unfriendly, Fisher Mall!

I decided not to make my unlove letter to Fisher Mall because  DON'T LIKE HATE and I choose ACTION instead.

My mom tried filing a complaint to Fisher Mall management the next day. To no avail...WALA!

Sunday we went back to Fisher Mall for the second day event.My mom went to the ladies’ CR to look for the janitress who helped us and sign as witness to the photos we took inside the cubicle. But she referred my mom to a person from an admin office representative.
According to Ms. Jendrean Lo, a Tenant Relations Officer, that wide door cubicle is intended for PWD, but my mom reitererated, how can you say it's for PWD? Not a single railing inside? Then Ms. Lo said "Mam sa ibang floors po may pwd CR"
All floors must have PWD CR, and to think that 4th floor is where their events hall are. 

So we filed a complaint directly to National Council on Disability Affairs (NCDA) and here's the draft of my letter.

Dear NCDA,

Greetings!

Last April 21, 2018, I have learned that Fisher Mall in Quezon City is PWD unfriendly because it hurt my feelings and hurt my mom’s lower back / spine. I am a PWD, my mom is a PWD – both of us have orthopedic disability.

We went to Fisher Mall to watch the National Open & Age Group Raw Powerlifting completion that was held on the event hall on the mall’s 4th floor. While watching the event, I told my mom that I need to pee and asked her to bring me to the toilet. Luckily, my dad was there to push my wheelchair because the toilet is a bit far from the event hall and since my mom uses a cane to walk, it’ll be hard for her to push my wheelchair alone. So we reached the toilet area. There is no PWD toilet. Good thing there’s a designated cubicle for PWD. Good thing? Or so I thought.

Since it is a women’s toilet, my dad can’t go inside so it was only me and my mom and that’s alright because she’s been assisting me in a PWD toilet for years and it’s not that hard since there are bars that we can hold on to that helps us in keeping our balance. 

With a flat wall and nothing to hold on to except my frail mother. We were looking around and tried to figure out how I can transfer from the wheelchair to the toilet bowl. We really can’t think of any easy way, we still can’t figure it out and I want to pee already. Bahala na! 

While I was transferring to the toilet bowl, the lower part of my left leg kind of hit my wheelchair. I have a big tumor inside it and although it doesn’t really hurt, that legs reacts and jerks every time that happens. It happened and fortunately it happened when I was about to sit on the bowl.

And so I have to transfer from the toilet bowl to the wheelchair. My mom lifted me up again. My left leg felt so weak and I can feel my mom’s brittle bones and I was afraid to hold on to tighten my hold on her brittle bone. I tried holding on to the flat wall but it just slipped. We were about to fall and then my mom pushed me on the wheelchair so that I won’t land on the floor. I was slouched on the wheelchair, my butt on the air, only my hips up to my back were touching the wheelchair, I haven’t wore my underwear and shorts yet and the worst part is, my mother’s hips, back and spine were aching. Thankfully, the janitress was on standby outside the cubicle’s door when my mom opened it to ask for help because I was still slouched and hanging on the wheelchair without underwear and shorts.

Because of their lack of sensitivity and concern for the PWDs, my mom’s weak bones that are often in pain became weaker and she need to undergo rehabilitation therapy.

Also, the so-called PWD cubicle is not big enough. The wheelchair can’t navigate properly.

***pwd door***

If this happened to us, how about the other PWDs who will be using that so-called PWD toilet cubicle? The management kept saying that there are the PWD toilets on the other floor levels? And why not on the 4th floor then? I don’t think it’s not that hard to attach bars on the toilet wall that the PWDs can hold on to.

I am really looking forward for you to take action and investigate on this. It’s not only for my sake or my mom but for the PWDs who will also use that toilet in the future.

Sincerely,
Maria Kathrina Lopez Yarza

We are also filing a complaint against the Fisher Mall Management for my Mom's injury.
I depend a lot on her since I am partially paralyzed, totally deaf and half blind.  And her mobility after that incident is quite restricted now. What if I fell from my wheelchair during that incident?

Today was my most awaited night

Like always, Michelle & Kathreen had a joint birthday celebration and sponsored our KAINAN SA LABAS NG BAHAY dinner. It’s something we really enjoyed doing since we we’re kids. Our first salu-salo dinner sa labas ng bahay was tuyo. 

Going back, so we had dinner a few hours ago and I was really amazed with what I saw. Yes SAW! I saw the food and things on the table. I saw the utensils. I saw their faces. I saw their gestures. I saw their moving lips. I saw the foods on my plate. I saw this. I saw that. My vision is still kinda blurry but I SAW.

Since last year, whenever we would eat outside the house with friends and/or family, I would always complain that it’s too dark and I can’t recognize the people & the food especially the food on my plate so after eating, as I say, I’ll just “eat and run” and go inside the house once I would finished eating and there were times that I chose not to come outside and have then bring the plate with food to me. It’s really annoying so instead of staying annoyed, I choose ti come where the bright light is.

from 

“Wala naman akong masyadong nakikita kaya papasok nalang ako sa bahay.” 

to 

“Papasok na ko kasi magku-kwento pa ko sa blog.”

 WHY THE TITLE?

Teacher Michelle's creamy carbonara na masarap

Today, it's 200 Filipino NF Friends!

I’m not sure if it’s okay to be happy about this, but I AM SO GLAD!

Ever since I met my first, NF Friend (Ate Cel), I’ve started listing down the names of my NF Friends. Wala lang. Gusto ko lang.

I started writing it on Notepad (the app).

And then the names on the list reached 15++, so I transferred it to MS Excel while we were hoping that we’ll be plenty enough to be able to form a support group.

And then NFF Support Group was born!

I keep revising and editing the list as our members grew in number. When it reached 50, I wished that if only I can group the members according to theeir location so that they’ll know who lives near who. But I think it won’t be fair for some if nobody else is located near them. 

Fast forward to today, we already have: 65 NF Friends from Metro Manila, 12 NF Friends in Rizal, 14 NF friend in Laguna, 13 NF Friends in Cavite, 8 NF Friends in Bulacan, 10 NF Friends in Southern Luzon, 23 NF Friends in Northern Luzon, 27 NF Friends in Visayas, 17 NF Friends in Mindanao, and 10 Filipinos with NF from outside the country.

Once again, I have mixed feelings about this. Happy that we already have a lot of members and it’s now a 3-digit number. Sad that there are a lot of us who have NF. And then VERY HAPPY that we found each other! We are really not alone.

  

The other night, while I was arranging & organizing the list, I suddenly felt so amazed, happy, & grateful all at the same time and so I posted this:

It goes something like this:

When there are members who were able to find NFF (support group) because a random person approached them and asked: “Do you have NF?” and then told them about NEUROFIBROMATOSIS FRIENDS (Philippines).

When there a students who send messages to the NFF page because of their case study, thesis or assignment that is about NF.

NF may still be not that known and a lot of people are still not aware about it but *tears of joy because even if it’s something small and only a few people knows about it, still there is something.

It’s just like the saying, “every cent counts.”

Big things are made of small things, right?